A DETERMINED MAN

                             

If I were limited to one word to describe my late husband Gordon, I would call him “determined.” Certainly his career as a pulmonary researcher and physician was marked by his determination to solve the riddles of COPD and Alpha-1 antitrypsin deficiency. Following his death, on June 8, 2013, the Alpha-1 Foundation described his professional contributions, in part, as follows.

“We lost a pioneer and dear friend with the passing of Gordon Snider,” said John Walsh, Alpha-1 Foundation president and CEO. “We all appreciate that he leaves an incredible legacy and we owe a debt of gratitude for his leadership, vision, tenacity, patience and friendship . . . Dr. Snider’s leadership helped the Foundation establish a robust research agenda.”

Bartolome Celli, MD, a professor of medicine at Harvard University and the Pulmonary and Critical Care Division of Brigham and Women’s Hospital . . . quot[ed] the Cuban poet Jose Marti: “The most important signature of a human is his written word and the memory of long lasting friends.” The poet’s words are “applicable to this remarkable man who touched us all. Yes, we lost a friend but his ‘signature’ will last forever,” Celli said.

In a career that spanned more than 40 years, Snider showed how emphysema is created and changed the direction of lung disease research for decades. He founded the pulmonary section of the Boston University School of Medicine and was chief of medical service at the Boston VA Medical Center for 14 years.

He served as president of the American Thoracic Society. He trained dozens of young researchers. He served on the Pulmonary Disease Advisory Board of the National Heart, Lung and Blood Institute of the National Institutes of Health and innumerable scientific committees. And he conducted his own groundbreaking research on lung diseases.

In 2009, the Alpha-1 Foundation presented Snider with a lifetime achievement award at an event attended by more than a hundred of his colleagues and researchers he trained – many of them now leading researchers and clinicians themselves . . . Celli served as master of ceremonies and said, “Dr. Snider is one of those rare giants, a triple threat — a great researcher, a superb caregiver and teacher.”

Gordon officially “retired” in 2000, but that didn’t stop him from going to the office almost every day. He loved interacting with the medical students and residents. It was a mutual attraction I’m told. He also used that time to co-author a number of research papers and, to the best of my recollection, to write at least one long article on the history of lung research. In addition, in his “free” time, Gordon continued as a member of the scientific leadership of both the Alpha-1 Foundation and the American Lung Association.

But Gordon’s determination wasn’t limited to his professional life. When I first met him, he was equally determined to beat what he told me was a genetic predisposition to heart disease on both sides of his family. To that end, he adhered to a strict diet and an equally strict regimen of daily exercise. Then one morning, barely two months after his 81^st birthday, Gordon’s genes finally caught up with him.

That morning I awoke to the sound of Gordon stumbling on his way up the stairs with my morning coffee and paper. Typical physician, he had a ready explanation. I wasn’t to worry he said. An hour or so later, however, he tried to jot down a phone number and his fingers wouldn’t cooperate. This time I called the doctor. She said we should go to the emergency room. Thankfully Gordon agreed.

Unfortunately, Gordon was having a stroke that, over the next twenty-four hours, immobilized his right side and significantly impaired his speech. Surprisingly, however, he wasn’t upset like I was. Instead, his spirits were up. After all, he said, he was lucky to have lived so long without any other major medical problems. 

From that point forward, Gordon never looked back. Our mutual mantra became, “Life’s still worth living because it beats the alternative hands down.” Rather than mourning his life pre-stroke, Gordon developed a two-step plan. First he would work hard to recover as much as he could and then he would reinvent himself. To find out how he did it, you’ll have to wait for my next post, “A DETERMINED MAN – PART II.”

HOW STRONG ARE YOU?

People often ask me what it’s like to be diagnosed with Alpha-1 COPD. Am I angry? How do I cope? The following is a five-minute talk that I was invited to give on the subject last year. The place was Sinai Temple. The occasion was Yom Kippur. Gordon Snider, my husband who died on June 8^th of this year, was still with me.

It was January 1993. I was about to turn fifty and the proud single parent of two beautiful daughters. I was also a successful New York State prosecutor. I ate healthy. I exercised regularly. Life was good. That is, until I got pneumonia.

        

After five days in the hospital and two weeks at home, I had my first check-up with my new pulmonologist, Dr. M. All I expected was permission to go back to work. Instead after a battery of tests and a lengthy physical examination, I was told I had chronic obstructive pulmonary disease or COPD.

According to Dr. M, all COPD was progressive and incurable. But then he told me that, in view of my otherwise good health, he’d tested me for a rare hereditary form of COPD called Alpha-1 antitrypsin deficiency or Alpha-1. “Odds are you don’t have it,” he cautioned. “But if you do, there’s an Alpha-1 therapy currently in clinical trials and, with a little luck, you could have ten more years.”

I have no memory of how I got home that day. But I’ll never forget the seemingly endless waves of grief that followed. Some days I could have sworn they were pulling me under in their wake. On the other hand, I wasn’t a stranger to grief and so I didn’t try to fight it; I simply endured it.

Until one day it finally dawned on me: Dr. M hadn’t given me a death sentence. With a little luck, he’d said, I could have ten more years! So I reached down deep inside and I told myself that I could get through this. In fact, I could get through it all on my own.

Shortly thereafter, Dr. M told me I had Alpha-1! At that moment in time, it was the best gift anyone could have given me! First I enrolled in the Alpha-1 trial. Then I began to take back my life. I also joined the board of the Alpha-1 Foundation and the search for a cure for Alpha-1. One of my fellow board members was a world-renowned pulmonologist. His name was Dr. Gordon L. Snider. One thing led to another and Gordon, now my husband and the love of my life, is with me here today.

Yes, life is still good. That said, for the past four years I’ve been on oxygen 24/7. And for the past three, my current pulmonologist has consistently reminded me that my only option left is a lung transplant. But if these past nineteen years and my husband have taught me nothing else, they’ve taught me that a lung transplant is not only difficult, but also risky. Put another way, a lung transplant is trading one set of problems for another, with no guarantees.

Over the last nineteen years, however, I’ve also learned that none of us truly knows how strong we really are until our lives or the lives of those we love are at risk. So last April, when my current pulmonologist looked me in the eye and told me that without a lung transplant I might not be around much longer, without missing a beat I told him I wanted to be evaluated. Likewise, even before my transplant evaluation was complete, I decided that if I was lucky enough to be accepted as a candidate, I would say yes.

In the end, it all came down to certain death within the next few years or taking a chance on life for five, ten and maybe even fifteen more. I chose life and today I’m awaiting a double-lung transplant at Brigham & Women’s Hospital in Boston. My job now is to stay healthy and strong so that, if I am so lucky, I can make the best of my “Gift of Life.”

ANGELS

Those of you who have read my book, “An Alpha-1 COPD Love Story,” already know that I believe in Angels. My Angels are or were real live people who inspire me. Gordon is definitely one of my Angels, as is my dear friend Rita. The following is my tribute to her.

I first got to know Rita in 1985.  Four years later, Rita was diagnosed and treated for breast cancer.  Typical Rita, she didn’t let it get her down.  The way she talked to friends and family about her treatment, you would have thought that we were the patients.  It was all about reassuring us.  But, that was my friend Rita.  She was always taking care of someone else. 

Fast forward to 1997. I can’t remember when or how I first found out.  I do remember that Rita hadn’t been feeling well for a while.  When she finally made time to go to the doctor, he ran some tests.  Then came the bad news.  After almost twenty years, Rita’s breast cancer had spread. She now had stage four liver cancer.

Everyone else I know would have been devastated by this diagnosis.  I know I was.  Not my friend Rita.  As always, and in her words, she just “picked herself up, dusted herself off and moved on.”  She quickly found herself an oncologist who promised to use his arsenal to keep her alive for as long as possible.  Then, she set out to put her affairs in order, to reassure her children, her grandchildren and her friends and to prepare them for what was to come.

I don’t know any other way to say it.  My friend Rita was amazing!  She knew she was living on borrowed time and she was determined to make the best of every minute of it.  I will never forget her infectious laugh.  Whenever we were together it was impossible not to catch it.  At the same time, however, Rita was continually preparing the rest of us for life after she was gone. In her words, God hadn’t taken her yet because he still had people for her to take care of.  

Rita talked openly about her death, but never in a morbid way.  Instead, she used her keen sense humor to ease what could otherwise be painful discussions.  For example, Rita told me that when she died, she didn’t want anyone saying she was at peace.  That’s because, she continued and then she started to laugh, “when God finally takes her, she’ll be kicking and screaming.”    

More than any other person I know, Rita loved life and lived it to the fullest. More than any other person I know, Rita cherished her family and her friends and, in turn, we all cherished her. More than any other person I know, Rita found happiness in life by taking care of others.

Yes, my friend Rita died yesterday. But I believe she’s still watching over her family and friends. All we have to do is to listen carefully enough and we’ll hear her. Sometimes life is tough, she’s telling us.  But then you just, “pick yourself up, dust yourself off and keep going.” 

A TRIBUTE TO MY HUSBAND

GORDON

I first met Gordon in January 1997 when we both joined the Alpha-1 Foundation Board. Four years later Gordon called me and told me he loved me. At the time, I had a good job and two wonderful children. I thought my life was fulfilled. But Gordon showed me what I was missing and turned my little world upside down.

Our children initially had reservations, especially about our 21-year age difference. But over time they’ve come to bond not only with us, but also with each other. And every year at Passover our children, their spouses and their children join with us to celebrate Passover, a tradition we plan to continue in honor of Gordon.

Gordon was my best friend; my soul mate and I will miss him terribly. On the other hand, as I told him shortly before he died, I will be OK. One reason is because Gordon, who looked out for me in so many ways, insisted we move to Glenmeadow, near where my children and my young grandchildren lived. So not only will I have the support of family and old friends, but also my new friends at Glenmeadow. Finally, as always, I will have the support of our Alpha-1 Community.

Others here today will rightly celebrate Gordon’s many accomplishments, his research, his mentoring and especially the influence he had on the Alpha-1 Foundation. But I want to celebrate his warm smile, his infectious laugh and his incredible love of life. One of the last things he told me was what a hard time he was having letting go. I want to celebrate Gordon the husband, the father, the grandfather and the friend. I loved him more than words can ever say. He changed my life forever.

A Whole New Life!

Exactly one week ago today, my doctor told me that it was time to consider transplant.  Without missing a beat, I said yes.  The next step is a family meeting on May 2 with the transplant team.  Then, hopefully, they will agree to test me further to see if I'm ready and able to be a candidate.  I am in their hands.  My job is to keep myself as healthy and strong as I can.

This weekend, my husband, family and I celebrated Passover and Easter.  Their message - new life and hope - couldn't have been more fitting.  That's exactly what I feel.  Even though I have been living with this disease for 19+ years, I never really thought I'd have the possibility of a transplant.  I always joked that I'd just be too old.  Instead, I planned for what I would do as my lung function decreased and my world got smaller.

Yes, that's the best image I can think of to describe how COPD affects your life.  At first, I hardly noticed it at all.  Even when I had to go on oxygen to exercise, to sleep and to fly, I still could do pretty much anything I wanted to.  Then, four years ago, I had to go on oxygen full-time and my world suddenly got smaller.  I never could leave my house without first figuring out how much oxygen I would need until I returned.  Overnight trips required a whole lot more planning as I had to make sure there would be oxygen there when I arrived.

Then, suddenly, one week ago today, I was given the first glimmer of hope.  They still can't cure my COPD, but just maybe I'll be able to get the next best thing, a lung transplant and a whole new life!  For the first time, I have hope that I'll be able to see my beautiful grandchildren grow up!  I can't think of any better present.

Those of you who have paid attention to this blog, know that I recently published a book, An Alpha-1 COPD Love Story.  It's the story of my life with Dr. Gordon L. Snider whom I met after being diagnosed with Alpha-1 COPD.  You also know that I haven't paid much attention to this blog since I first started it a few months ago.

Well, I've  made a new resolution.  From now on, every Monday I will write another post.  Some will be about COPD and the need to find a cure.  In addition, however, I feel compelled to chronicle my Alpha-1 COPD journey from this point forward.  As with my book, I hope that this blog may help someone else, some time, some where.

My diagnosis of Alpha-1 COPD is already one of the best things that ever happened to me.  Without it, I never would have met my Alpha-1 COPD community and, above all, my wonderful husband.  Now I have been given the gift of hope and new life.  In the spirit of Passover and Easter, I want to share it with the world!

An Alpha-1 COPD Love Story

Sally Everett recounts struggle with Alpha-1 COPD in new book

Published: Wednesday, January 25, 2012, 6:07 AM

 By Christine White 

Photo by Cory WhiteSally Everett at her home in Longmeadow. Everett has written a book about her battle with chronic, genetic lung disease.

LONGMEADOW - In 1993, Sally Everett was 50, a single mother, living in Nyack, N.Y., and working as regional director of the Medicaid fraud unit in the attorney general’s office, when a bout of pneumonia led to a devastating diagnosis. 

Doctors told her she had Alpha-1 COPD, a genetic pulmonary disease. They gave her 10 years, at best, to live. 

Nineteen years later, and now living at Glenmeadow with her husband, Dr. Gordon L. Snider, Everett has written a memoir - “An Alpha-1 COPD Love Story,” published by Small Batch Books. It is about her journey from health to illness, the love she encountered along the way, and her fight to raise money and awareness to battle this deadly disease. 

“COPD (Chronic obstructive pulmonary disease) is the third greatest cause of death in the U.S., after heart disease and cancer,” Everett said recently, “and yet the Centers for Disease Control doesn’t have a budget for it. Every four minutes someone dies of COPD.” 

Everett is working to change that, but she didn’t start out embracing her illness or championing its cause. 

“After my diagnosis, I gave myself one week to feel sorry for myself, and then I just got on with life,” she said - with one exception. “I threw caution to the wind. I gave myself permission to be extravagant for one whole year.” 

But when the year ended, it was time to confront her condition. She joined a church and its support group for those with challenging illnesses. 

“It enabled me to open up,” she said. 

She was also ready to meet and embrace others with Alpha-1 COPD and in 1994 joined their association. 

“I found strong people there, with a good attitude,” she explained. “Many of them are still good friends.” 

Then in the late 1990s, she was elected to the board of the Alpha-1 Foundation. Unlike the Alpha-1 Association, which serves as a support group and information distributor, the foundation is designed to raise money for research. 

Also elected to the board that year, as science adviser, was Dr. Snider, a renowned pulmonologist. They became good friends. Everett didn’t realize how good. 

In 2001, he called her from his home in Boston and told her that he loved her and wanted to start a relationship. 

“You could have picked me up off the floor,” Everett said. The only response she could think to give him was, ‘Can I get back to you in a couple of weeks?’” 

A year later, she moved to Boston to be with him and in 2006, they married. That same year, they moved to Longmeadow. Oddly enough, their roles have in some ways reversed. She was the one with a critical diagnosis when they met. Since then, Snider has suffered a stroke and has battled lymphoma. But they have a philosophy they live by: “Life’s still worth living if it beats the alternative.” 

Alpha-1 is a deficiency in a protein, manufactured primarily in the liver, that protects the lungs. It can affect both the liver and lungs, leading to COPD in adults and liver disease in newborns, children and adults. 

COPD is often called “Smokers Disease,” but new research points to a genetic predisposition in those diagnosed with it. That’s why only about 20 percent of smokers get it. According to Everett, awareness of this condition needs to be raised, since even many primary care physicians are unfamiliar with its genetic aspect. 

“Both liver doctors and pulmonologists know about Alpha-1 and know to test right away for the genetic component when they encounter liver disease or COPD, but among family doctors and internists, it’s not so well known.” she said. 

Clinical trials are now under way in New York to test all newborns for the genetic disorder. While there’s nothing that can be done to cure the problem, short of a transplant, anyone with a predisposition would be warned to protect themselves from risk factors such as smoking, and environmental and industrial pollutants. 

It took Everett 2 1/2 years to write and publish the book. 

“I started out writing the book for my grandchildren,” she said. “I wanted them to know they always have choices. It may not be the choices you wish you had, but you always have choices. Then I realized that I could help others, as well. Stuff happens in life that we can’t predict. It’s what we do when it does that defines us.” 

The book is available at www.amazon.com or www.barnesandnoble.com. Half the profits from the sale of the book will support research into Alpha-1 and COPD. 

© 2012 masslive.com. All rights reserved.

ANOTHER ALPHA ANGEL

                                  “FOREVER ON THE UPSWING”

My friend Greg Hules died this morning. For those Alphas (persons with Alpha-1 antitrypsin deficiency) lucky enough to have known him, he was a one-of-a-kind.  For those who weren’t so lucky, Greg figured prominently in the last chapter my book, An Alpha-1 COPD Love Story. Here’s part of what I wrote about him.

            By 1988, Alpha-1 emphysema had severely compromised Greg, then age 38.  As a result, he joined a pulmonary rehabilitation course and then one thing led to another.  By 1990, he had formed an Alpha-1 support group in San Francisco and then his group joined with another in Minnesota to form the Alpha-1 National Association.  As sick as he was, Greg agreed to serve on the Executive Committee of the Association and later became its President.

             Greg continued to serve the Association right up to his double lung transplant in 1997.  Following his transplant, Greg first re-established himself as an entrepreneur.  Later, he joined the board of the Alpha-1 Foundation and, from 2003 to 2004, served as its Chair.  He finally rotated off in June 2011, after nine more years of service to the Alpha-1 community.

            Greg wrote a piece for the Foundation’s Ten Year Retrospective.  Its ending gives you the flavor of Greg better than I ever could.  “My story began in the late ‘80’s.  It is filled with memories of people who have made a difference . . . And tomorrow’s promise makes me believe our story has just begun.  To those who have served in the past, to those that serve today, and to those who will join with us to make a difference tomorrow, I thank you.  I wouldn’t have missed it for the world!”

Greg was a Giant within our Alpha-1 community. We will all miss his can-do attitude and warm smile. Greg was also a wonderful husband to Sandi and a devoted father to their two boys. I will always remember Greg, however, as “forever on the upswing.”

Greg’s health began to seriously decline over the last couple of years. But from talking to Greg, you never would have known it.  Whenever I asked Greg how he was feeling, he’d invariably reply, “Well, I’ve just been through a little rough patch, but now I’m on the upswing.” Whenever I begin to feel sorry for myself now, all I have to do is think of Greg. Then, as if by magic, a smile creeps back onto my face.

We have a wonderful tradition within our Alpha-1 community of honoring all those who have lost their battle with Alpha-1. We call them our “Alpha Angels.” Now Greg is one of our Alpha Angels. I know he is watching over all of us who loved him.